Sunday, February 26, 2012

If pigs could fly...

If I had a dollar every time somebody asked me if I were going to be swearing in their presence, I would be a heck of a lot closer to funding my service dog. I cannot begin to count up all the times that I have had people ask me if I swear uncontrollably, or tell me how cool it is that I get to “get away” with swearing all the time. I have even had professors in the education department at my school ask if I will be swearing in their class.

The funny thing about living with Tourette’s is that it isn’t a “get out of jail free” card. I would still get the same nasty looks if I started swearing in public even if I disclosed to everybody within earshot I had Tourette’s. People really don’t care. Sure, it sounds good in theory; I disclose my disability and everybody goes on their merry way. But you can’t ignore somebody dropping the “f-bomb” at the top of their lungs in a grocery store or somebody muttering inappropriate phrases under their breath in the library. It is still socially inappropriate, even if you do choose to disclose.

Tourette’s is so much more than swearing in quiet rooms; in fact, only 10% of Touretters experience coprolalia. If approximately 1 in every 1,000 people in the United States have been diagnosed with Tourette Syndrome and only 1 in every 10 of those Touretters have coprolalia, this is only 0.01% of the population who have the “swearing tic”. Why then, do educated professors at my college ask me if I’m going to swear in class? Why is that the only way Tourette’s is ever portrayed in Hollywood movies? People tell me that I’m lucky because I can swear without retribution. They don’t know what it is like to be terrified that the “f-bomb” will be pulled out of your throat without your permission. I would never swear at somebody and blame it on my tics; the same way I wouldn’t pretend to have any other disability.

That isn’t to say I don’t swear, and that isn’t to say that I don’t swear in response to my tics. Trust me, when you slam your head into a piece of furniture so hard you see stars and get a concussion, keeping your language clean isn’t the first thing on your mind. When your toes are curling up for so long and with such force that you are stricken with wave after wave of never-ending charlie-horses, swearing really isn’t all that out of line. But I’m in control of what comes out of my mouth, even if it doesn’t feel like it at the moment, I have the control to keep my mouth shut or to swear. Coprolalia is different; when I was experiencing coprolalia, I had no control. It was like an out-of-body experience, somebody else reached in and took control of that part of my brain and made it say things. It’s like when I have palalia (repetition of syllables, words, or phrases that I say), I’m not in control of the words and sounds coming out of my mouth at that point in time. The difference is that palalia only makes me sound like I have a stutter, coprolalia makes me sounds like someone with severe boundary issues and no verbal filter.

When I was a freshman I did a speech in my speech class about how Tourette’s is portrayed by the media. I knew it was bad, but I was honestly appalled. There is a reason that Tourette's has the "image" it does; it is the only way it is portrayed. Ever. The Touched by an Angel Christmas special one year was about a father who was so upset and frustrated by his child having Tourette’s that he ended up committing murder. I just finished a book (that was published very recently) that had a character with Tourette’s - even though it was barely talked about - who was under suspicion of committing murder and who had lived alone all his life because he never found somebody to love him in spite of the tics. In fact, in looking up every instance of Tourette’s in shows and movies and books I could find, I was startled to find that the only positive portrayal of Tourette Syndrome in main-stream media was on South Park of all things. I don’t watch South Park at all, but my understanding of the episode from the clips I was able to find online is that they introduce a character with Tourette’s to the show. One of the main characters thinks how cool it must be to get away with swearing and hitting people that they start to imitate the behaviors, telling people they have Tourette’s. By the end of the episode they have explained why it is hurtful to imitate the tics and while it may look cool to be able to get away with things like that, it is still a medical disorder (I’m pretty sure they don’t call it a disability, but maybe somebody with more South Park knowledge could let me know) and not a choice.

Much more despicable than the person who has been simply misinformed, is the person that chooses to imitate Tourette's.  A non-disabled, neurotypical person, choosing to imitate Tourette's to get away with something.  In a previous blog post I described what it is like for me to fly, it's nothing short of an excruciating form of mental torture.  You are in such close quarters to other people that the odds of having a tic that gets out of control and hits or jostles somebody increases exponentially.  Somebody I used to live with knew all of this.  They knew my tics, what they looked like, and the hell I went through trying to have some semblance of normalcy in my life (this was before I had become very open about what I live with).  After a break from school, they described to me how on the last flight they were on, somebody sitting next to them was in their personal space and how they began to pretend to tic, snapped at the person that they had Tourettes, and then enjoyed a flight with more arm room.  Truthfully, I didn't say anything to them at that moment in time; I was too taken aback to formulate an appropriate response.  I'm no longer in contact with the person, but that still gets under my skin.  That somebody who is neurotypical, that has a brain and body that functions they way it was meant to, thought it was okay to imitate my disability to make their lives a little easier.  There is nothing easy about life with Tourette's.

Somebody once asked me if I felt like it were my "mission" to educate people on Tourette Syndrome (this was during a presentation and I feel as though they might have thought I became a little “preachy”). At the time I answered “No.” Now though, I might be tempted to answer yes, at least to some extent. I am a person with a disability. And not a run-of-the-mill, easily accepted disability, but an invisible disability that leaves me susceptible to ridicule and stereotyping just by saying the word “Tourette’s”. I have never had an access challenge, I have never had anybody try and remove me from somewhere I am, even though people might on occasion wish it. I have never had to explain myself to management or an employee, though I have heard many instances where people with Tourette’s have had to do this. I don’t think I’m incredibly lucky for never having had a run-in, or that this means I’m a “mild” Touretter; all it is, is evidence of is my ability to stay out of public when I might have particularly strong tic outbursts. I don’t go to movies late at night (and certainly not to The Artist). I would prefer being in a louder restaurant than a quiet one, because then when I do tic it’s less noticeable. I turn down invitations with friends to go out if I know that I will have had to work all day that day or I know I’m already feeling tired. I can’t and I don’t work past 6:30 at night, not because I don’t need the money, but because that has me home by 7:00. Any later and I start to doubt my ability to drive home safely. I never go to study in the library at school because I would be too worried about causing a disturbance to get any work done. I am careful. I avoid instances where I have to tell people I have Tourette Syndrome because it is so mis-understood and stereotyped against.

But, even though I am a person with a disability, I have as much right as a neurotypical person to be somewhere. And that does mean speaking out about my disability and about what I live with. That means attempting to educate people about life with Tourette’s, because maybe something I say sinks in. In my eyes there has been a lot done to perpetrate this gross misconception about what Tourette’s is, and there is still a lot being done to continue this. There was a movie preview I remember seeing this summer where a character made a joke about Tourette’s. I know some Touretters don’t really mind that, but I do. Not because I don’t have a sense of humor about what I live with (how could you not?), but because that doesn’t help people living with Tourette’s. Nobody – at least I hope nobody – makes jokes about people who are blind, or in a wheelchair. But for some reason, it is still acceptable to make jokes about people with Tourette Syndrome. And if my living a “normal” life means I have to educate people about intimate details of my life and talk about the stereotypes surrounding Tourettes, then so be it.

And don’t even get me started on the “Tourette’s Guy” youtube videos…

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